Claire's medical journey
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Please see the newest update for important up-to-date information regarding Claire's diagnosis.
While most 18 yr olds are going off to college, Claire has been in the fight of her life! Claire has recently been diagnosed with a rare autoimmune neurological disease called Progressive encephalomyelitis with rigidity and myoclonus (PERM), a variant of Stiff Person Syndrome (SPS). The occurrence rate, 1 in a Million. It is a debilitating progressive autoimmune neurological disease that attacks the brain and spine. It causes muscular rigidity and spasms, as well as the brainstem and autonomic dysfunction.
On February 14, 2019, after having anesthesia, Claire's life changed forever and has not been the same since... that very night, she started having muscle spasms, so violent they looked liked seizures when falling asleep, each and every time she fell asleep!! We spent the next year and a half going to doctors and specialists, and they could not figure out what was happening to her. Then on August 11, 2020, she had to have surgery for pelvic organ prolapse, and when she woke up, those spasms would become 24/7. While her doctors have not said anesthesia from surgeries she's had were the cause, it definitely was a trigger.
What is PERM SPS? It can affect every muscle in the body, making them tight, painful, and spastic. These aren't your garden variety muscle spasms. They can be so severe that they can rupture muscles, break bones, and even be life-threatening as breathing can be compromised when they occur in the throat, diaphragm, and chest. They come in attacks and can last several hours. They are painful, violent, jerking, shaking, seizure-like spasms; she cannot walk, her legs buckle underneath her if she tries. Unfortunately, these attacks happen more days than not. When she does not have attacks, her muscles have become sore, stiff, and painful.
Multiple times and just in the last week, we had to call 911 twice; both times, she was rushed to the hospital because she was gasping for air from having spasms in her throat. These attacks are triggered by cold, irritating, loud, intrusive noises, being startled, and emotions, both good and bad. Imagine if getting upset or overly happy could put your child's life in jeopardy because that is our life now!
Since this disease is so rare, 1 in a million, not many doctors even know it exists, let alone know how to treat it. Going to the Emergency room is always a gamble because ER doctors have never seen it. Paramedics have to google it on their way to our house, and we have to tell them how to treat her!
The pain and medical issues Claire has had to endure in the past few years is unfathomable for anyone, let alone an 18 yr old. She also has Ehlers Danlos, a genetic connective tissue disorder that causes weakened connective tissues, contributing to her needing multiple serious surgeries in her young life.
While there is no way to anticipate all of her future medical expenses following are some in the near future. We are believing she will be healed; this can go into remission. She has her entire life ahead of her and deserves the best care. Will you help us?
*We would like to bring her to the Center for SPS at John Hopkins in Maryland, where there is a world-renowned SPS neurologist who can hopefully create and oversee her treatment plan.
*She is currently on medications around the clock to help control the attacks. She has had one round of IVIG treatment, a first-line treatment, an antibody IV infusion. She will need ongoing infusions, which will either be done as an inpatient, for five days, like the first time or an infusion center.
*Ideally, since this is autoimmune, we would like her treatment plan to include integrative medical care. Nutrition, vitamins, therapy are all crucial with autoimmune disease. As we all know, insurance does not cover integrative/ holistic medical care, so we have not been able to do this yet.
As you can imagine, the medical bills and debt have become insurmountable, and we don't foresee them stopping anytime soon. Almost two years of searching for answers, going to top specialists in the country, paying out of pocket for much of it along with deductibles and copays have totaled well over $15,000. This is not including any new bills for her recent diagnosis.
In August, the surgery she had was $16,000 for the surgical fee. Since she is so young and has a connective tissue disorder, no local surgeons would touch her. We wanted the very best, highly skilled surgeon to give her the best possible outcome, reserving her ability to have children. The only caveat, he didn't accept our insurance. So, we did what most parents would do and used credit, Care Credit, which has to be paid in full by August; that payment alone is $1300 a month. We are waiting to see if insurance will pay any of the additional $20,000 hospital charges! We were only expecting to pay $400 in hospital fees, but she had to stay in the hospital for five days after surgery due to the spasms. It turns out; we did make the right decision, going into more debt because the surgery itself was successful.
We just weren't counting on a 1 in a million autoimmune neurological disease after surgery! She spent most of her summer after graduating in a tremendous amount of pain, and we kept encouraging her, "Once this surgery is behind, you can begin living again" little did we know what the outcome would be. It is heartbreaking to see your child one day be ok, and the next wake up from surgery and have a debilitating neurological disease.
Our hope and prayers are that she will be totally healed, but we have a long road ahead and know the medical bills will keep coming in addition to the medical debt we already have. Please consider helping us get her the very best medical care to go into remission, be healed, and grow into the person our God intended her to be!
Most importantly, please pray for us, for Claire, for her life! And if praying is not your thing, we'd appreciate your positive thoughts and good vibes too!
They say she has a one in a million disease, we say she will have a one in a million testimony, triumph, and miracle coming!
From the bottom of our hearts, thank you so much for being here, sharing Claire's story, and donating, in any amount; every little bit helps! We are truly grateful.
For more info:
Stiffperson.org
http://thetinman.org/whatissps.html
https://rarediseases.org/rare-diseases/stiff-person-syndrome/
To see more about Claire's story
https://www.facebook.com/barbara.johncke
For those wanting to donate directly:
CashApp $BarbaraJohncke
While most 18 yr olds are going off to college, Claire has been in the fight of her life! Claire has recently been diagnosed with a rare autoimmune neurological disease called Progressive encephalomyelitis with rigidity and myoclonus (PERM), a variant of Stiff Person Syndrome (SPS). The occurrence rate, 1 in a Million. It is a debilitating progressive autoimmune neurological disease that attacks the brain and spine. It causes muscular rigidity and spasms, as well as the brainstem and autonomic dysfunction.
On February 14, 2019, after having anesthesia, Claire's life changed forever and has not been the same since... that very night, she started having muscle spasms, so violent they looked liked seizures when falling asleep, each and every time she fell asleep!! We spent the next year and a half going to doctors and specialists, and they could not figure out what was happening to her. Then on August 11, 2020, she had to have surgery for pelvic organ prolapse, and when she woke up, those spasms would become 24/7. While her doctors have not said anesthesia from surgeries she's had were the cause, it definitely was a trigger.
What is PERM SPS? It can affect every muscle in the body, making them tight, painful, and spastic. These aren't your garden variety muscle spasms. They can be so severe that they can rupture muscles, break bones, and even be life-threatening as breathing can be compromised when they occur in the throat, diaphragm, and chest. They come in attacks and can last several hours. They are painful, violent, jerking, shaking, seizure-like spasms; she cannot walk, her legs buckle underneath her if she tries. Unfortunately, these attacks happen more days than not. When she does not have attacks, her muscles have become sore, stiff, and painful.
Multiple times and just in the last week, we had to call 911 twice; both times, she was rushed to the hospital because she was gasping for air from having spasms in her throat. These attacks are triggered by cold, irritating, loud, intrusive noises, being startled, and emotions, both good and bad. Imagine if getting upset or overly happy could put your child's life in jeopardy because that is our life now!
Since this disease is so rare, 1 in a million, not many doctors even know it exists, let alone know how to treat it. Going to the Emergency room is always a gamble because ER doctors have never seen it. Paramedics have to google it on their way to our house, and we have to tell them how to treat her!
The pain and medical issues Claire has had to endure in the past few years is unfathomable for anyone, let alone an 18 yr old. She also has Ehlers Danlos, a genetic connective tissue disorder that causes weakened connective tissues, contributing to her needing multiple serious surgeries in her young life.
While there is no way to anticipate all of her future medical expenses following are some in the near future. We are believing she will be healed; this can go into remission. She has her entire life ahead of her and deserves the best care. Will you help us?
*We would like to bring her to the Center for SPS at John Hopkins in Maryland, where there is a world-renowned SPS neurologist who can hopefully create and oversee her treatment plan.
*She is currently on medications around the clock to help control the attacks. She has had one round of IVIG treatment, a first-line treatment, an antibody IV infusion. She will need ongoing infusions, which will either be done as an inpatient, for five days, like the first time or an infusion center.
*Ideally, since this is autoimmune, we would like her treatment plan to include integrative medical care. Nutrition, vitamins, therapy are all crucial with autoimmune disease. As we all know, insurance does not cover integrative/ holistic medical care, so we have not been able to do this yet.
As you can imagine, the medical bills and debt have become insurmountable, and we don't foresee them stopping anytime soon. Almost two years of searching for answers, going to top specialists in the country, paying out of pocket for much of it along with deductibles and copays have totaled well over $15,000. This is not including any new bills for her recent diagnosis.
In August, the surgery she had was $16,000 for the surgical fee. Since she is so young and has a connective tissue disorder, no local surgeons would touch her. We wanted the very best, highly skilled surgeon to give her the best possible outcome, reserving her ability to have children. The only caveat, he didn't accept our insurance. So, we did what most parents would do and used credit, Care Credit, which has to be paid in full by August; that payment alone is $1300 a month. We are waiting to see if insurance will pay any of the additional $20,000 hospital charges! We were only expecting to pay $400 in hospital fees, but she had to stay in the hospital for five days after surgery due to the spasms. It turns out; we did make the right decision, going into more debt because the surgery itself was successful.
We just weren't counting on a 1 in a million autoimmune neurological disease after surgery! She spent most of her summer after graduating in a tremendous amount of pain, and we kept encouraging her, "Once this surgery is behind, you can begin living again" little did we know what the outcome would be. It is heartbreaking to see your child one day be ok, and the next wake up from surgery and have a debilitating neurological disease.
Our hope and prayers are that she will be totally healed, but we have a long road ahead and know the medical bills will keep coming in addition to the medical debt we already have. Please consider helping us get her the very best medical care to go into remission, be healed, and grow into the person our God intended her to be!
Most importantly, please pray for us, for Claire, for her life! And if praying is not your thing, we'd appreciate your positive thoughts and good vibes too!
They say she has a one in a million disease, we say she will have a one in a million testimony, triumph, and miracle coming!
From the bottom of our hearts, thank you so much for being here, sharing Claire's story, and donating, in any amount; every little bit helps! We are truly grateful.
For more info:
Stiffperson.org
http://thetinman.org/whatissps.html
https://rarediseases.org/rare-diseases/stiff-person-syndrome/
To see more about Claire's story
https://www.facebook.com/barbara.johncke
For those wanting to donate directly:
CashApp $BarbaraJohncke
Organizer
The Johncke Family
Organizer
West Palm Beach, FL